Life has got in the way and it has been awhile since I have wrote in Hunter’s blog. I have been enrolled in school full time and adjusting to life as a single mom. As you can imagine, this has me busy with little time to sit down and blog.
Hunter has been doing really well. He has been healthy. We still struggle with his vision, speech delays, and cerebral palsy. The Retinopathy of Prematurity still has a stronghold on Hunter's eyes. It worries me that his vision continues to get worse and I dread his vision appointments. He has been going to pre-school. His school works with an IEP. He receives his speech, occupational, and physical therapy. In addition, they bring an outside consultant in to work on vision and mobility with him. The school he attends is wonderful and I can't speak more highly of the entire staff that works with Hunter. Despite his disabilities and developmental delays, Hunter is normal as he can be. His disabilities does not define him whatsoever.
Recently, Tim and I had to make an important decision on Hunter’s medical treatment. We met with Hunter’s Physical Medicine and Rehabilitation Doctor. Hunter is outgrowing Botox injections. In previous blogs, I wrote that the Botox injections were used to reduce the spasticity in his legs as a result of the cerebral palsy. Under her advisement, she suggested that we start looking at more long lasting, permanent forms of treatment.
Our first option was a Baclofen Pump. The pump would have a catheter that was inserted into his spinal fluid. The pump would provide constant medication and would reduce spasticity. However, Hunter is diplegic. This means that the cerebral palsy only affects him from the waist down. Baclofen would affect his entire body. In addition, Hunter is too rambunctious to have a pump attached to him. This spelled nightmare and many late night emergency room visits to re-insert the catheter when Hunter would yank it out.
Our second option was to do nothing. Let Hunter be how he is. This means that eventually the spasticity in his legs would start wearing his joints out and cause him pain. He would always walk with his walker. Hunter is capable of so much more. So, this was not an option either.
Our last option was called the Midline Selective Dorsal Rhizotomy. It is an intensive surgery. The Rhizotomy requires the surgeons to go into the nerve roots in the spine and start clipping them to permanently reduce the spasticity in his legs. We chose this treatment option and Hunter goes into surgery on Friday, May 17, 2013.
We had our last visit with the neurosurgeon's office today. We found out that the surgery will last for approximately five hours. They will break apart his spine and get to the nerve roots, they will attach a machine and figure out which nerve roots are causing the spasticity in his legs. After they know which nerve roots are affected, they will clip them. It is our hope that this will reduce the spasticity. Our goal is to have him walk independently after months and months of physical and occupational therapy.
However, recovery is not easy. Once the surgery is over, Hunter will be in the hospital for 14-21 days. They will give him the weekend to rest. They will start extensive inpatient physical and occupational therapy on Monday, May 20th. They warned us that this day will be hard on Hunter. He will still be very sore from surgery and they will have him moving around. Hunter will have to learn everything again. They will start from the beginning and move forward. He will have to learn how to roll over, crawl, and walk. Hopefully, when he learns to walk again, he will walk without a walker and/or his range of motion will improve significantly.
Initially, they warned me that when Hunter comes out of the surgery, the tone that he has relied on will be gone. It will appear that the surgery has set him back. He will be in a wheelchair for approximately 3 months. As he progresses through physical and occupational therapy, his condition should improve and our ultimate goal is to see him walking independently. After his release from the hospital, Hunter will be in therapy 3-4 days a week for a year. Therapy will last a couple hours on each of those days.
With all this said, I am going to activate his blog again. I will be blogging through Hunter’s entire transformation. I can’t wait to share his struggles, progress, courage, strength, and determination with the world. It is my dream to see my child walk, run, and play with other children. I know that a miracle is around the corner. I know Hunter can do this. Now, I want to share this with you. Please stay tuned for his progress.
0 comments:
Post a Comment